Whine time

Sherryg683 · 03-13-2006, 09:31 PM

I just had my 4th treatment of taxotere on Friday. I have Herceptin weekly and take Xeloda (14/7). The last couple of taxotere treatments have really knocked me for a loop. By Sunday, I have terrible headaches, my rib cages feel like they are being squeezed in a vice and I am just so tired that I just lay around. I get to feeling pretty good by the third week and then they zap me again. I'm sure you all can relate. I am so ready to get this treatment over with and feel somewhat normal physically again. Has anyone else had the terrible pain in the rib area, plus I get terrible gas (not too attractive). I also seem to get terribly depressed after my taxotere and weepy, I guess that comes with the physical pain. Just need a little support to keep me going. I know I have at least 2 more taxoteres to go, and it's getting harder each time. I am so hoping that everything will be clean after that, I have been responding very well to the chemo (at least at my 6 weeks scan), so I don't want to change anything. I just want to feel like my old self again.....sherryg683

Lolly · 03-13-2006, 10:52 PM

Sherry, I know this is hard. The hardest thing you've ever had to do, probably. But just try to remember it will be done with soon, you're OVER halfway thorugh. Just try not to think too far ahead. Concentrate on getting through each day only, and the rest will take care of itself. Also, if you've got a lot on your plate on the home front, it's time to ask for help from family and friends if you can. If not, ask the nurses at your treatment center to put you in touch with a social worker. These angels have contacts to those in your community who will step in and help with shopping and errands, yard work, anything you and your family need to help you through this last lap of the treatment marathon.

Hope this gives you some encouragement, you can do it!

<3 Lolly

tousled1 · 03-14-2006, 06:11 AM

Sherry,

I agree with Lolly, you must take things one day at a time. I find that if I try and look to far ahead I too get very depressed. I try and maintain a positive attitude and just let my body tell me what I can and can not do. The women on this board all have different experiences and such a wealth of knowledge. They are an inspiration to me. Keep you chin up things will get better.

DeborahNC · 03-14-2006, 06:40 AM

((Sherry))

I did 3 rounds (out of the recommended 6) of Taxol and felt like my ribs were literally dissolving from pain! I cried and sobbed with this torment and none of the pain meds alleviated it. I laid on a moist heating pad, one of those long ones that can wrap around the rib cage, constantly when in bed. Frankly, I don't think my onc really believed the pain was so severe and I certainly wasn't prepared for it.

You're not whining. You're venting and have every justification for doing so. The beauty of this site is that we're here for one another at need.

Hugs to you, Deborah in NC

Diane H · 03-14-2006, 07:51 AM

Oh I remember how hard it was, Big Gentle Hugs to you... Very good advice to think in terms of one day at a time. I used I think vicodin and it helped alot--- or maybe it was oxycodone. At any rate don't try to tough it out, take the meds. You WILL get there, sending prayers and more hugs, Diane

Helen · 03-14-2006, 10:49 AM

Hang in there! I was also on taxotere and I know how you feel. You have gone more than halfway and it looks like you are responding pretty good with your treatment. I will keep you in my thoughts and prayers.

Helen

03-14-2006, 11:36 AM

Hi and Best Wishes to All! Does anyone get dizzy and yucky feeling on xeloda? I thought I had some kind of bug a few weeks ago. My onc told me to go off the xeloda for a few days and when I did, I felt good again. The same thing is happening this week- same shaky and dizzy feeling. I don't like going off the xeloda and I'm interested in seeing if any of you have had this happen? God Bless- CathyW

StephN · 03-14-2006, 11:57 AM

OOOH! Makes me hurt just to think about that drug ...
Taxotere was the toughtest of all the chemos I took - by FAR! I was on 4 and every 3 weeks. By the last one the dose was cut by 25% - as I could barely tolerate the stuff. That 3 week dose was murder!

My med onc got me on Neurontin and this helped. I was so tired from fighting the pain that I was almost a little goofy at times. Clumsey and weak. My heating pad was my best friend on many days!

All the Taxol I had was nothing like Taxotere, but I had the Taxol weekly.

lkc Gumby · 03-14-2006, 02:07 PM

Hi Sherry,

Taxotere hit me really hard too. The rib and bone pain were excruiating. I also was weepy for a few days after my infusions. My onc put me on pain meds which helped trmendously and then I weaned off them gradually.
Please keep in mind, that this pain will gradually go away. I had my last Taxotere around Thanksgiving. I thought I would feel this way forever, but now I just have Herceptin Headches.
Keep positive, be kind to yourself and keep the faith.
It does get better.
Good Luck.

Linda

tousled1 · 03-14-2006, 04:34 PM

Seems like a lot of you have had a lot of joint/bone pain with the Taxatore. I start Taxatore tomorrow (4 treatments - one every 3 weeks). Oncologist keeps saying that there is less joint/pain with Taxatore than with Taxol. Guess I'll just have to wait and see what happens. I must again say how inspiring you women are. You certainly are a courageous bunch!

MCS · 03-14-2006, 07:36 PM

OOOOOOOHHHHH I was on Taxol, not Taxotere. My onc also said join pains and left at that. This was an understatement. Rib pain, caving in. Headaches where I could not even think. all I could do was lie down and atake viadent /ibuprofen- took 1 1/2 hours for pain to subside.

Even three weeks later I still get the rib pains, late in the afternoon.

I will try the heating pad for it. Thank you.

Hang in there. We are all with you

Blessings all

MCS (Maria)

kk1 · 03-15-2006, 06:17 AM

I really don't understand why more onc's don't give the taxotere weekly. The side effects are so much less when you take it weekly and the few reports I have seen suggests that it is just as effective as the 3week regime. I think the problem is similar to the too high xeloda issue...the original studies were done with very high dose so the standard of care was to begin people at the 4,000mg/day level.....slowly the doc's are figuring out that that is too high and that significantly lower doses work just as well with less side effects.

It's not very exciting to fund new trials for an already exisiting drug but at lower doses so it takes a long time to change the standard of care and get the word out.

kk1

madubois63 · 03-15-2006, 06:25 AM

I have to agree with KK1 (sorry, I don't know your name)....I was getting the weekly dose of Taxotere and tolerated it very well (except for day three, but I was prepared). When we tried something new and went for the 3 week regimen - it knocked me for a loop and I haven't been the same since (three weeks ago). Studies are showing that smaller doses over an extended period of time are working just as well if not better than the alternative...an most of all WE are handling it better. It may be more time spent in the oncology center, but it is less time spent in bed recovering...JMO

Lolly · 03-15-2006, 09:01 AM

I haven't had taxotere, but am commenting on Xeloda, re kk1's post. I started Xeloda a month ago at the lowest dose, 500mg 2 x's daily and have had no side effects but definite response to the affected lymph nodes. Sometimes less IS more

<3 Lolly

StephN · 03-15-2006, 12:09 PM

So HAAPPY you are responding to the Xeloda so quickly!
That must be a really great feeling - rather then dragging on and on with the Navelbine if that was no longer effective.
One question - are these the SAME nodes that keep showing up or do they change from episode to spisode?

Maybe your hair will not all fall out on this low dose of Xeloda.

Sherryg683 · 03-15-2006, 12:21 PM

I am taking 1,500mgs of Xeloxa, twice daily, and I am a small person. I really wish I could convince my Oncologist that less is more. I am 4 days into my cycle of 14 and already my hands are getting sore and red. I've had blisters all over my hands and feet with this stuff and had to get off for 2 weeks. I LOVE playing tennis, it was my stress relief and now I can't play because it agrivates my hands. I really want to exercise but any friction messes my hands and feet up..all I can do is swim. Do you have any link to articles about the "smaller dose" working as well. I'd love to give my Oncologist written support of this, he is very open minded and would listen. Although, I had such good results on my 6 week scan, I think he doesn't want to change anything. I may just have to rough it for another few months and hope I get NED...sherryg683

03-15-2006, 05:24 PM

Hi Lolly, Steph and Sherry,
I have been on xeloda almost a year. My hair hasn't fallen out, but has been thinning. I started at 3000mg daily, but I'm down to 2000 because of dizziness, shakiness and headache. This week they took me off of it for a few days and I'm not sure what they will tell me tomorrow when I get my herceptin. I also have the hand-foot syndrome. I wasn't so upset when they reduced my dosage. It stopped all of the diahreah I was getting which was a lot. I remember someone on this board, I beleive it was Al, who said that when they did the original testing for xeloda they set the dosage much higher than needed. He said if you have undesirable side effects , they could easily cut the dose in half. It has really worked for me (along with lots of prayer) and now I am NED. Do you know how long they keep you on the stuff if you are NED? God Bless- CathyW

Lolly · 03-15-2006, 09:52 PM

Steph, Sherry, Cathy and all;

I'm being treated for the same nodes that showed activity at my first recurrence in 2001; we knock 'em back for awhile, then I get breaks of various lengths from chemo although always stay on Herceptin. When they start showing activity again, we again add chemo. It's been amazing to me that we've been able to keep the cancer contained to these same lymphs, at least as far as we know.

I'm still on Navelbine/Herceptin weekly, although my onc cut the Navelbine dose in half permanently when I started the Xeloda, to help stabilize my blood counts. So far this is working well. My onc said he felt the continuous dosing schedule for Xeloda made the most sense to him, that way not giving the cancer time to recuperate in between. We WERE going to increase the dose after we saw how I reacted to the initial low dose but since I'm having a good response with notable shrinking and no side effects, we're leaving well enough alone since a higher dose might initiate side effects and then I'd have to take breaks from Xeloda and there goes the continuous dosing idea.

Cathy, I've only truly been NED after my first recurrence, and I was NED by the third month into Navelbine/Herceptin but was kept on the regimen for another 3 months to make sure all was good. I then continued on Herceptin maintenance for 2 and 1/2 years before having a second recurrence and going back on chemo with Herceptin. We are able to keep the disease contained to the lymph nodes, and for long periods of time the affected nodes are "dormant"; by that I mean I have no symptoms of activity (pain and tenderness and nodes increasing in size).

Sherry, there aren't very many studies yet using Xeloda in this type of continuous regimen, but here's a link to an abstract I found citing a study with Avastin combined with chemo using this continuous dosing schedule. It's called "metronomic dosing". Here's also an excerpt:

Metronomic Therapy Appears Useful in Advanced Breast Cancer Patients: Presented at SABCS
By Howard Fenton

http://www.docguide.com/news/content...2570D1006FCD6A

SAN ANTONIO, TX -- December 8, 2005 -- Low-level, frequent-dosing treatment in combination with bevacizumab has potential benefits for some women with advanced breast cancer, researchers said here at the 28th Annual San Antonio Breast Cancer Symposium (SABCS).

"This therapy shows particular promise for patients who are resistant to traditional chemotherapy treatment," said Harold Burstein, MD, assistant professor of medicine, Harvard Medical School/Dana Farber Cancer Institute, Boston, Massachusetts, during a presentation on December 8th...

...Dr. Burstein described metronomic chemotherapy as a low-dose chemotherapy, similar to a metronome in its repetitiveness. Metronomic chemotherapy by itself has minimal effectiveness, he said, noting that in a second arm of the randomized study, only 2 (9.5%) of 21 patients responded to metronomic doses of cyclophosphamide and methotrexate...When bevacizumab was added to the regimen in the second arm of the study, the therapy appeared to be more active, Dr. Burstein said. He suggested that pairing metronomic chemotherapy with a dedicated anti-angiogenesis therapy might be particularly effective.

"Metronomic chemotherapy in combination with bevacizumab has clinical activity in advanced breast cancer," he said. "Further investigation of this novel treatment strategy is warranted."

He said the treatment was well tolerated with few acute adverse effects in the patients tested. While these results are preliminary, Dr. Burstein advocated further study of this admittedly novel treatment strategy, including a no-treatment trial...

Lolly · 03-15-2006, 11:09 PM

Less is more, regularly: metronomic dosing of cytotoxic drugs can target tumor angiogenesis in mice

http://www.jci.org/cgi/content/full/105/8/1045

Douglas Hanahan1,2, Gabriele Bergers1,2 and Emily Bergsland2,3

1 Department of Biochemistry and Biophysics,
2 Hormone Research Institute, and
3 Department of Medicine, University of California San Francisco, San Francisco, California, USA

Chemotherapeutic drugs, long the mainstay of cancer treatment, cause DNA damage and disrupt DNA replication in proliferating cells. Drug regimens have been designed to kill as many tumor cells as possible by treating with "maximum tolerated doses" (MTDs) of these cytotoxic agents. Side effects such as neurotoxicity and damage to proliferating cells in healthy tissues pose serious constraints on the use of chemotherapy. In an effort to balance toxicity with efficacy, a conventional dosing schedule calls for episodic application of a cytotoxic drug at or near the MTD, followed by periods of rest to allow normal tissues to recover. Many such chemotherapy regimens are initially efficacious, resulting in tumor regression or stabilization and prolonged survival. In rare cases, cures are achieved. In general, however, responses are short-lived, with relapses often marked by aggressive cancers that are resistant to the cytotoxic drug...

The changing logic of chemotherapy: metronomic dosing at lower levels, in combination with other agents:
...The conventional logic of chemotherapy has been to treat cancers with closely spaced bolus infusions of drugs at or near the MTD, followed by substantial rest periods. The typical results were transitory improvements in tumor burden and life-span extension accompanied by disturbing side effects and eventual relapse. The new logic of chemotherapy involves dosing at constant intervals without rest periods (metronomic scheduling), the use of lower doses to minimize toxic side effects and eliminate the obligatory rest periods, and combination with other drugs targeting distinct aspects of a cancer’s functionality. The metronomic and combinatorial dosing strategies can kill tumor endothelial cells as well as overt cancer cells and, perhaps, other cellular constituents of a tumor, offering the prospect for genuine efficacy…

Shell · 03-16-2006, 05:54 AM

Sherry-

please don't allow your symptoms on xeloda to move past a Grade II, on either the clinical or functional domain scale. Check out the web site of www.xeloda.com for lots of advise and guidelines, and DON'T tough it out (as I mistakenly did after my second round) thinking it would help my body. It didn't, and I progressed to a Grade 3 of side-effects, and had to go off it for several weeks to get back to normal. After that, my dosage was reduced 25%.

Shell